Seizure Update

By rainkinz on Jul 20, 2012, comments 115

Ngaire has been continuing to have quite a few seizures. Finally, last Sunday, Chau just told the doctor, "Now can you prescribe the carnitine?". He finally did and we've been slowly increasing the dose every few days as a lot of people have mentioned their children have GI issues if you just start it all at once. We had a pretty bad, Monday and Tuesday. She probably had a hundred seizures each day, but on Wednesday I think things began to slow down. Yesterday was definitely better and today she 'only had' 13 seizures we counted at breakfast. I think (I pray!!!), the carnitine might be starting to do its job. The theory is that it helps with the breakdown of fat into energy. There also seems to be a relationship (negative) between depakote and the diet. Something about depakote being transported by or binding to fat, which inhibits it being used for energy? I have to look into that more. Although, I'm sure depakote is not helping Ngaire. If anything it might be hindering the whole process.

Chau and I argue about reducing it all the time and every time I think I'm going to get the opportunity to start removing it some sort of road block is put up. Right, now after a pretty good morning seizure wise, Chau doesn't want me to lower the depakote as she doesn't want to 'change anything'. We were going to increase the carnitine 1/4 tab tomorrow anyway, so she's probably right as far a doing this scientifically goes, but we simply have no evidence that depakote has ever helped Ngaire at all and it's just stupid to me that she's still on something that almost certainly makes her more cranky, impulsive and is probably the cause of her waking up at night screaming many nights. I think that started with depakote as I recall, although this is exactly why I'm trying to write more here so that I have a bit better record of some of the other things that go on that we don't track so well.

Anyway, hopefully we have a good weekend. I think the carnitine is working. Will be interesting to see what's happening in a week...

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